Hello 

so we’ve been to see the consultant at the big hospital and the doctor was very brutal discussing the diagnosis of CMML, and coldly told my partner that he may only have 18 months and proceeded to just focus on every single negative thing about this disease. We walked out after without knowing enough, yes we’ve been given a booklet but I can’t relate to the content because it’s got to much medicaleze and Alex won’t look at it at all.

Two nights later Alex was hit very badly with the bombshell of what he’s got and I woke up to find him struggling, there was a lot of tears, I’ve been trying to get him to be more positive and hopeful that the chemotherapy treatments that he’s going to start soon will give him more time but I’m struggling with my own emotions because I’ve tried to read some of the booklet and do some research on the internet but everything is warning me that this is a life limiting disease and that even with effective treatments his life expectancy will be quite short.

I suppose I’m hoping that someone with this disease will be able to say “I’ve been managing this disease with chemotherapy for years now and I’m doing alright” but trying to find others with CMML just in the uk is proving difficult to say the least, other website forums seem to be quite inactive and posts seem quite old or to advanced for me to understand so I’ve not signed up yet, I might do so next week and hope that I can get some help there too.

In addition he doesn’t want to contact his family as they’re quite toxic and he hasn’t had anything to do with them for years so a stem cell transplant if necessary doesn’t seem very likely at this point but the hospital have asked him to contact them for matching but he’s not ready to do that yet and might never be.

I just needed to write something down to stop myself from sobbing uncontrollably as I don’t know if he can deal with my pain as well as his own. I just hope that someone can give me a bit of strength.

thank you.